Introduction and links to 3 chosen communities
One of my fieldwork settings was a school for students with a variety of special needs, including physical needs, autism needs and others. Having never been part of an online community before, I wondered if groups exist on the internet to support parents and families of children with various disabilities.
I searched with Google. I found it very easy to find online support communities internationally, particularly based from the UK and the USA. Here are links to two British sites which include the ability to join online support groups.
The first is called Hemi-kids UK, and is for families of children specifically with hemiplegia. (Note it asks parents to join a more general group if their children have a more generalised cerebral palsy). The second link is to a website and several different online forums for families with special needs children generally.
I found it more difficult to find online support groups in New Zealand - there are several sites offering advice and contact details for local support groups, but these tended to be more offline support once an interested person makes contact. This may be because of the smaller size of New Zealand, with potentially less need to rely on chat rooms if people can make other connections. However, I did locate this site(link below), which as part of it has a discussion forum for young people with autism. They cannot chat in "real time", but can post thoughts , ideas and messages to each other on the forum online. The website itself is called Cloud 9 Children's Foundation, and here is the link to the forum:
Brief description of each community
- What do you think is the intended purpose of the site? Information can be linked here from the specific sites.
- How interactive is this site?
- How can people contribute?
- What do they contribute?
Hemikids
This includes online discussions groups, email discussion groups and information on hemiplegia and details of local support groups.The site is specifically aimed at parents of children with hemiplegia, hemiplegic cerebral palsy or hemiparesis. The purpose of the site is to provide information and links for families with shared interests in the condition their child has.
The site is interactive in that there are online fora. For example, there is Hemihelp Online Forum for UK parents. People need to register and agree to conditions of use of the site. But once registered they can read postings, place postings of their own and interact with other users. There is not a live chat room.
The forum is split into topics of interest, including types of therapy, equipment, emotional and behavioural issues and funding issues.
Special Kids UK
This is set up in a very similar way to Hemikids. However there is not only a forum but a chat room for those who have registered.
I was unable to read any postings at all without joining up, whereas on the Hemikids site I could read public postings and get the gist of what topics are covered without actually joining.
I joined up with Special Kids but found that even after sending an email and verifying it, then being able to log in, I could still only see the broad topic heads rather than individual postings. I am sure I could have eventually found my way online with help from the site administrator, but had already spent quite a bit of time getting to stage 1!
The Special Kids site has not only a forum but a chat room which makes the community even more potentially "interactive". People must register but can then be involved posting to forums or the chat room. Topics covered include communicating with your special needs child, education, items for sale or swap, and bereavement for those whose children have died or are terminally ill.
I was unable to read any postings at all without joining up, whereas on the Hemikids site I could read public postings and get the gist of what topics are covered without actually joining.
I joined up with Special Kids but found that even after sending an email and verifying it, then being able to log in, I could still only see the broad topic heads rather than individual postings. I am sure I could have eventually found my way online with help from the site administrator, but had already spent quite a bit of time getting to stage 1!
The Special Kids site has not only a forum but a chat room which makes the community even more potentially "interactive". People must register but can then be involved posting to forums or the chat room. Topics covered include communicating with your special needs child, education, items for sale or swap, and bereavement for those whose children have died or are terminally ill.
Cloud 9 NZ (Aspergers children)
This site provides information and assistance for parents, including details of local support groups. It also has an online discussion forum for "young people" themselves. From viewing the postings I saw that the young people tended to be around the age of 12 or 13.
The forum is very interactive and young people who have registered make postings which include an avatar icon and their (probably real) first name. The recent postings are in the nature of children introducing themselves and their interests, on the basis that they may make online connections with other Aspergers' young people.
Material presented in the online package.
- Make comment on why people choose to contribute to each community.
- What is it they are seeking?
- Is information shared one way or reciprocal?
- How do you think chosen sites address or relate to occupation concepts introduced in tutorial one e.g. occupational justice, occupational disruption, occupational transition, or occupational deprivation. Choose at least 2 concepts to discuss.
Hemikids
I believe that parents contribute to this site to obtain information, support and advice from, and to provide the benefit of their own experience to, others in a similar (and rare) situation. In a geographic community there will be few families with children with the condition.
The forum definitely involves reciprocity.
I believe people are participating in this community for most or all of Kollock's (1999) 4 reasons. They anticipate reciprocity and enjoy a sense of community. They may also get a sense of efficacy, at the very least by being parents trying to do their best for their children. Some participants will also be interested in increased recognition of the impairments and issues their children face.
From the postings I reviewed, I saw links to occupational justice (discussions on funding sources and equity) and occupational deprivation (a parent asking how their child might be able to ride a trike, and what features the trike might need).
Special Kids UK
I consider the purpose and reasons for being involved in Special kids UK are very similar to those of Hemikids participants (see above), with the exception that geographic considerations may not be so strong since the site covers all special needs children rather than simply those with a particular type of condition involving one-sidedness (hemi).
Cloud 9 Aspergers children
The forum definitely involves reciprocity.
I believe people are participating in this community for most or all of Kollock's (1999) 4 reasons. They anticipate reciprocity and enjoy a sense of community. They may also get a sense of efficacy, at the very least by being parents trying to do their best for their children. Some participants will also be interested in increased recognition of the impairments and issues their children face.
From the postings I reviewed, I saw links to occupational justice (discussions on funding sources and equity) and occupational deprivation (a parent asking how their child might be able to ride a trike, and what features the trike might need).
Special Kids UK
I consider the purpose and reasons for being involved in Special kids UK are very similar to those of Hemikids participants (see above), with the exception that geographic considerations may not be so strong since the site covers all special needs children rather than simply those with a particular type of condition involving one-sidedness (hemi).
Cloud 9 Aspergers children
I believe this online forum is NOT so much to provide and seek information and advice, but to make social connections with like-minded people. The forum states it is for young people with Aspergers to connect, discuss ideas and maybe strike up friendship with like-minded others in different parts of New Zealand.
Children posting a comment are looking for reciprocity, which may or may not meet a response. In my view, because of the age of the children involved, the postings are fairly superficial and generally involve only a comment and a response for each child. However, the potential exists for an ongoing online friendship if that develops.
I believe that children participate in the forum for 2 out of Kollock's(1999) 4 reasons, namely sense of efficacy and sense of community. The children posting seem to be aware of their own diagnoses of having Aspergers, and are seeking a sense of normality and community by becoming involved.
I saw links with occupational transition here, namely the transition from being children to young people able to make connections in their own right towards full participation in society. I also saw links to occupational disruption in the parents' information section, with information about behavioural meltdowns and other relatively extreme disruptions to occupational participation on a daily basis.
Reference
Potential ethical issues eg lack of identity and accountability
"Please do not join Hemi-Kids in order to promote a product, harvest email addresses or with the intention of using the Hemi-Kids list to promote a newly launched website or organization."
Benefits and limitations of these communities compared with traditional geographical communities (considered in terms of Otago Polytechnic's online learning package).
Of the 10 benefits specified in the online package(slides 10 and 11) I consider the Hemikids and Special Kids UK provide all of these, with the exception that potential members of Special Kids cannot actually be silent observers before they participate (since one cannot see threads till one has applied to join). Both online communities compliment the other communities the families live in, for example communities involving their health professionals and teachers and human (not virtual) support network.
The Cloud 9 forum also provides many benefits, for example the ability to make connections beyond the geographical area the young people live in, and to share exchanges with like minded people. However, to date the forum is being used more to "say hi" than to share factual information. This ability to make social connections is still, of course, a benefit to those who may not form connections so easily in person.
In terms of the downsides of the communities (slide 12), I consider all 3 communities could easily be examples of those which are organic and could change in their focus to something not necessarily intended in the beginning (this might be good or bad), For example, people might focus their postings on selling old items of equipment rather than exchanging information, say, on funding sources. The Cloud 9 site may never develop beyond one-off hellos into cyberspace.
As well, the larger 2 UK sites (Hemikids and Special Kids) must involve enormous input from administrators (one topic had 334,000 posts), yet people can join and participate for free.
Other negatives such as potential misuse and people placing too much reliance on virtual as opposed to real communities would also be risks for all 3 sites.
However, the negatives were likely outweighed by the positives - I did see real benefits in global information sharing between people with shared interests.
Reference
However, the negatives were likely outweighed by the positives - I did see real benefits in global information sharing between people with shared interests.
Reference
Sunderland, J. (2012). Online Learning Package. Week 3: Online communities.[Slides].Dundedin: Otago Polytechnic. Retrieved from http://www.moodle.op.ac.nz.
